SS and social conflicts

[anagram]

Well, you can all probably tell that I'm back on prednisone by this point. (Almost 1am EST and I think this is my fourth post tonight- sorry!)

I was wondering how all of you handle your illness when you get into new social or work situations. I'm graduating next week, and then moving to a new state to start a PhD program. And before I get there I'd like to have a better plan for how to deal with my illness in terms of other people.

I've spent the last 2 years in my current location working on my Master's degree- and while I've definitely had some great academic experiences, socially things were really difficult for me until just recently. I've never had a problem making friends in the past- but now that I more consistently have all of the struggles that come with living with a chronic illness, it's so easy for new people to judge me as snobby, unfriendly, disinterested, etc. when I just might be having a difficult day physically with my health problems. I'm not a totally private person, but I've never been very comfortable with just bringing up my health problems in an initial meeting with someone- I prefer to wait until I know them a little better and then decide if that is information I want to share.
But lately it seems like it's hard for me to even get to that point with new people. They misperceive my actions, aren't nice to me as a result, and then it makes it all the more difficult for me to want to share something so personal with them.

I feel like the course of my potential friendships (not to mention dating life) is controlled completely by my health problems, and it's really getting old.

What strategies do all of you use when sharing your illness (and how it impacts you) with new people... new employers, acquintences, co-workers, dates, etc.?

[Linda196]

I'm afraid I can't be much help with this problem, and I don't envy you going through it at your age...my more obvious problems built up over the years so I got through all the "meet, greet and impress" parts of my social life while I was still relatively healthy, without outward signs of illness. I did manage to interview for and get a new therapist/technician job following a stroke, and I was very "upfront" about it on my application, but quick to point out that the causes were well controlled by that time, and I had no residual damage.

Now, when I meet new people, I don't bring health issues up unless they do. If I'm feeling unwell (now there's a nice simple understatement!) I simply excuse myself and leave the situation. I don't often put myself in social situations anyway, but when I have to, I make sure I have an "out"...for example when we attended a family wedding last fall, I booked a room at the hotel where the reception was even though it wasn't far from home. That way my husband could enjoy all the festivities while I slipped away to rest.

One thing I've had a personal problem with is that I often assume that people see my absences, non-physicality, or limitations, as laziness and antisocial behaviour, and I tend to respond to my perception of their reaction, without waiting for them to actually respond. That isn't fair to the other person, and I'm working on it. by expecting others to not judge me fairly, I've been unfair to them! I suppose the psychologists among us will interpret that as feelings of guilt about my illness, but I'm working on that, too!

My only advise would be to try to see yourself as a person who happens to have SjS (or other chronic illness)...not as a SjS patient! The person has to come first, the illness is only a part of that.

[Jag]

I can only add that it's rough. I have been told by people tha I seem 'offish' but it's when I'm not feeling well. It's easy to be misunderstood, and it's even more difficult when people don't know what you're sick with or the effects it has. Kudos to you for all your hard work with school!

Jag

[Scottietottie]

Hi Anagram 

I don't know what to advise either. There isn't any one answer that would fit everyone because our SjS manifests itself in different ways and very individually.

When I started my current job it was very obvious that I was in pain because I needed a cane to walk with. After knee surgery, that's resolved. No more cane. The woman I work most closely with, is also a friend so I've told her about SjS but I don't think she really understands.

My team leader is meant to do regular supervisions with me and hasn't been doing them. I do have one scheduled for next week and intend to tell her then that health is a concern. She likes staff nights out and things and I've declined several invitations to go because by the end of the week I'm just too tired. I think she thinks I'm stand offish but I hope to sort it out when I have my supervision.

Your health isn't anyone else's business unless you want to share. I'm sure when someone gets to know you they'll realise you're not stand offish at all.

Take care - Scottie 
 

[anagram]

I can definitely relate to everything you have said. I habitually now don't accept invitations for social situations unless I have an "out" planned- just in case. It makes all these new transitions that come up in life really hard- because I feel like I have to go through the entire process of 'proving' myself as an outgoing and friendly person anytime I turn up in a new situation. If it so happens that I'm having health struggles during that time- it's like that misinterpreted 'standoffish' impression everyone gets never leaves- regardless of how much better I might be doing later.

And Linda I totally relate to what you were saying about assuming people think I'm lazy or irresponsible if I need a day or more off due to health. I'm actually pretty paranoid about it- and definitely feel associated guilt with my illness. I think this is especially true because I have yet to have a doctor tell me exactly what it is that is going on that explains all of my problems. I feel like until I get that label- I'm even having a hard time convincing myself sometimes that this is not all in my head- which makes taking any time off work even more guilt ridden, because I feel like I should be able to just be healthy if I somehow tried enough.

My followup appt with the ENT is coming up in a few days, and I assume he'll have my biopsy results. I'm starting to get nervous already- as strange as it sounds, I feel like the worst news he could tell me is that my biopsy was negative and there is nothing wrong with me. That's one more diagnosis I just can't bear to hear anymore.
So.... if my biopsy is negative- what does that really mean? Does the biopsy only test for Sjogren's? Are there potentially any other conditions that could cause these same problems? I'm hoping to go into that appt at least educated enough that I might know what additional questions or tests to ask for if necessary. It's getting harder and harder to justify the stress (not to mention expense) of going to new doctors when I just keep end up hearing the same thing, yes- something is definitely wrong, we're just not sure what. So let's just not do anything about it and see how much worse things get so we can say this again the next time you come in.

But I'm not bitter.... lol

[Scottietottie]

Hi Anagram 

You've probably read in here already that some people do have SjS but don't have positive bloods or biopsies. You know your body. You KNOW it's NOT in your head. You know it's for real. We believe you.
I hope you get the result you are looking for but if you don't - it doesn't mean that you're imagining things.

Take care - Scottie 

[wordnerd]

Anagram,

Wow a lot of what you said is really close to home.  I've had a lot of issues with friends since I've been sick.  I'm also a recovering perfectionist who has a hard time not feeling guilty when I can't do everything I used to.

I don't remember if you mentioned how old you are, but I'm assuming you're somewhat near my age (24)... I've noticed that people in their 20s seem have an especially hard time knowing how to cope with a peer with a chronic illness.  I tend towards being very upfront with people I meet about what's going on with me.  I have noticed that the more matter of fact I am about it, the more accepting people seem to be.

I guess I'm realizing that other people take a lot of cues on what to think about it from me.  The more comfortable I get with it, the more comfortable others are around me.  I've been really surprised actually how accepting and accommodating people are when I present it as.. yeah I have Sjogrens and yeah it's frustrating that I can't do the things I used to do, but oh well everyone has their own issues to deal with.

I wish I could be of more help, but I'm still trying to figure it out myself.  Also... your name is awesome! 

Take care!

-Lauren

[Annj5]

Hi Anagram,

Adjustment to this dratted disease is tough. I'm sorry it's hard for you right now.

I was depressed for awhile after I had to quit work due to the fatigue and brain fog. I was really insulted when my rheumy suggested that I see a psych person, but I did go, reluctantly.

It ended up being a very positive and therapeutic visit. I feel so much better now. I don't know if this is something that you would consider, but it was good for me.

I found out a lot about my friends and family as my condition got worse. I found out who were my true friends, and those that weren't, well, they went by the wayside. I just don't have the energy to maintain relationships that are one - way. My hubby and kids have been great - but my other relatives, since they live about a thousand miles from where I live, were slower to understand what is going on with my health. I am not one to whine and such, but when I didn't do a good job of explaining things, they understandably didn't get it either. So I try to be a much better communicator, and that has helped a lot. Two of my sisters are also nurses as I am, and I just kind of thought they were more informed about autoimmune diseases than they were.

Hang in there! Know that you have the support of all your Sjoggie family here!
Julia 

[agatha]

Hi Anagram

I'm extremely open about it all with most people - I find the majority of people are sympathetic and understanding and  it helps them to understand when I'm not myself.

Hope life becomes easier for you as you move into the next phase of your life.
love
Agatha

[Shari]

When I have an invitation from a new acquantance that I don't feel up to I say that I am not up to it just then but can I call to get together another day.  Each situation is just a little different to judge when to say anything but when I do I try to give a very brief explanation.  The rest is if they want to know or a need to know basis.

If individuals don't understand or consider one lazy then they may be ignorant to how debilitating an illness can be. There are those I choose to stay away from because of the negative attitude~~the ones that hurt~~and there are the ones who go out of their way to understand and be patient with you.

I guess it is a learning experience for us and them.  Take care~~~remember you are valuable and a gift to those who get to know you~~Shari